Inequities in access to directly-funded home care in Canada: a privilege only afforded to some

Background Directly-funded home care (DF) provides government funds to people who need assistance with the activities of daily living, allowing them to arrange their own services. As programs expand globally, many allow DF clients to hire home care agencies to organize their services rather than finding their own workers. In Canada, half of the DF home care programs allow users to purchase agency services. The goal of this research is to describe the role of agency providers in DF home care in Canada and consider potential equity implications for service access from the perspectives of clients and families. Methods Framed with intersectionality, the study included online focus groups with families and clients (n = 56) in the two Canadian provinces of Alberta and Manitoba between June 2021-April 2022. All transcripts underwent qualitative thematic analysis using open and axial coding techniques. Each transcript was analyzed by two of three possible independent coders using Dedoose qualitative analysis software. Results The article presents five thematic findings. First, the focus groups document high rates of satisfaction with the care regardless of whether the client uses agency providers. Second, agency providers mediate some of the administrative barriers and emotional strain of using DF home care, and this is especially important for family caregivers who are working or have additional care responsibilities. Third, there are out-of-pocket expenses reported by most participants, with agency clients describing administrative fees despite lower pay for the frontline care workers. Fourth, agencies are not generally effective for linguistic and/or cultural matching between workers and families. Finally, we find that DF care programs cannot compensate for a limited informal support network. Conclusions Clients and families often intentionally choose DF home care after negative experiences with other public service options, yet the results suggest that in some Canadian contexts, DF home care is a privilege only afforded to some. Given the growing inequalities that exist in Canadian society, all public home care options must be open to all who need it, irrespective of ability to pay, degree of social support, or competence in the English language. Supplementary Information The online version contains supplementary material available at 10.1186/s12913-023-09048-9.


Background
Directly-funded home care (DF) provides government funds to older people, people with disabilities, and caregivers to arrange their own assistance with the activities of daily living. DF 1 home care is expanding globally as a potential avenue to relieve strained home care systems [1][2][3][4][5]. Systematic reviews find that clients are more satisfied with DF over other home care options that do not allow for as much input and control [4,6]. Yet, research also finds that expanding DF programs "can inadvertently extend health inequities" for people with intellectual disabilities and those living in rural settings, posing barriers to arranging care [7]. Another study found that DF reinforces inequities across class and gender, as "those with higher income" are more likely to access the program and men report relying on informal care provided by female partners to supplement the program [8]. Research on direct payments in the United Kingdom has long raised concerns about barriers to access for certain groups such as older people, people with learning disabilities, and people living with mental health issues [9,10]. There is an urgent need for research that attends to potential health inequities caused by DF policy design and expansion.
One key policy design issue is whether clients should be permitted to use the funds to hire home care agencies. In many contexts, DF programs originated to enable adults with physical disabilities to hire care workers from their personal networks through an individual employer model. Workers often do not have any formal training, and friends and family are sometimes hired [11]. This can allow clients to pursue workers with shared linguistic, cultural and other individual characteristics, although there is limited research on whether this actually happens. One study of diverse stroke survivors found linguistic barriers to initially accessing DF [12]; another study confirms the need to remove linguistic barriers and suggests language-matching is a key facilitator for high quality care for South Asian older people in Britain [13].
As DF programs expand and evolve globally many allow DF funds to be used to hire home care agencies to organize the services, rather than requiring clients to find workers themselves. In Canada, for example, all 10 provinces have a DF home care program and half of them allow clients to use the funds to hire home care agencies [14]. Yet, much of the research establishing the benefits of DF models of care are based on individual employer models in comparison to agency services. The foundational study by Carlson et al. [2] found DF users had "major improvement in their care and overall wellbeing" as compared to a control group using agency services [2]. Similarly, Benjamin et al. [15] found that DF clients "report more positive outcomes than those in the agency model, or they report no difference. " In both studies, the control groups were clients using agency services. The results are thus not directly applicable to other contexts, such as Canada, where DF is used both to hire agencies and/or to hire workers directly as an alternative to government-organized services.
The goal of this research is to describe the role of agency providers in DF home care in Canada and consider potential equity implications for service access from the perspectives of clients and families. Through indepth qualitative focus groups with 56 families and clients in two Canadian provinces, we share five thematic results. First, participants express high rates of satisfaction regardless of whether they use agency providers. Second, agency providers mediate some of the administrative barriers and emotional strain of using DF home care, and this is especially important for caregivers who are working or have additional care responsibilities. Third, there are out-of-pocket expenses reported by most participants, with agency clients describing administrative fees despite lower pay for the frontline care workers. Fourth, agencies are generally not effective for linguistic or cultural matching. Finally, we find that agencies cannot compensate for a limited informal support network. Clients and families often choose DF home care after negative experiences with other service options, yet it emerges that in some Canadian contexts, DF home care is a privilege only afforded to some.

Canadian context
Canada has a federal-provincial/territorial governance structure with home care services falling under provincial/territorial jurisdiction. There is wide variation in the availability, cost, eligibility, and organization of home care services across the country [16,17]. Canada's universal health care system is governed by the Canada Health Act -which does not include home care services; nevertheless, all jurisdictions offer some degree of public home care services. Eligibility is based on a clinical assessment of need for assistance with the activities of daily living (ADLs) and sometimes for the instrumental activities of daily living (IADLs) such as housekeeping. Eligibility may be income-based or universal depending on location. Population research documents 41.1% of Canadian households use formal home care services covered by government support; on the other end of the spectrum, 35.4% of households pay entirely out-of-pocket [18]. To further complicate this landscape, home care may be 1 There are numerous terms that vary regionally and sometimes more broadly include individualized or personalized care plans. In this article, we focus on programs that include a cash transfer or budget for care. Other terms include but are not limited to: cash and counselling; cash-for-care; direct payments; consumer directed care; and self-managed care. delivered by public employees, by public contracts with for-profit and/or non-profit home care agencies, or a combination.
In terms of DF home care programs specifically, there are options in all 10 provinces but none in the territories. DF home care operates as a niche option serving a small proportion of home care recipients in most locations [14,17]. Our prior research identified the use of agency providers as a contentious and poorly understood manifestation of Canadian DF home care [19]. There is limited and dispersed information on the number, size, and practices of agencies operating in each province. To better understand this issue, we investigated the role of agency providers in two DF home care programs with a high proportion of agency use in the provinces of Manitoba and Alberta. 2

Theoretical framework
The study draws on intersectionality, a theoretical tool and methodology that connects oppression and privilege to lived experiences [20,21]. A foundational concept in feminist and gender studies, intersectionality is rooted in anti-racist and feminist movements, championed by black feminist activists and scholars such as Kimberlé Crenshaw, the Combahee River Collective and Patricia Hill Collins [20,22,23]. Intersectionality demonstrates how lived-experiences are shaped by the complex and shifting interactions of gender, race, class, dis/ ability, and other key identity factors and is well-suited to qualitative research [24,25]. Population and public health research is increasingly drawing on intersectionality to explain effects of social location on health and well-being [26,27].

Methods
Data collection included online focus groups with DF home care clients and/or their supports in each province. Focus groups are an ideal method for comparing experiences of groups of people and have been used successfully in studying DF programs in other countries [28,29]. Focus groups were held using Zoom between June 2021-April 2022. Remote data collection was used in light of the Covid-19 pandemic.
DF clients and families were recruited in two regional health areas based in large metropolitan cities in the provinces of Manitoba and Alberta. The health region in Alberta was selected due to a pilot DF program designed for clients who want to hire agencies. At the time of the study, the Alberta health region had 704 clients enrolled in DF (including 216 on the pilot program). The Manitoba health region was selected due to a high proportion of agency use (40% of clients), with approximately 980 total DF clients at the time of the study.
Participants were recruited through an information package emailed or mailed to all clients in Alberta and clients with an active email address in Manitoba (physical mail out was not feasible at the time due to pandemic strain). Recruitment was facilitated by government collaborators using a single blind recruitment strategy so that the research team did not have access to personal information of the clients unless they chose to contact us. Potential participants were directed to a secure research website where they completed preliminary screening questions confirming their province of residence, enrollment in a relevant DF program, and their current hiring mechanism. If eligible, potential participants read and could elect to sign an online consent form, provide basic demographic information, and indicate preferred dates and times for focus groups. In line with our intersectional framework we prioritized the participation of multiply-marginalized individuals by re-scheduling when necessary. If language or computer access was an issue, interested participants could enroll by phone.
There were seven groups in Manitoba, with 32 participants in total, and seven groups in Alberta, with 24 participants, making for a total of 56 participants. The study took place during various waves of the pandemic and some of the resulting groups had very few participants. Qualitative methods research finds four focus groups of 6-10 participants per relevant group stratification are usually sufficient for thematic coding saturation; [30] we adjusted the participant targets based on the assumption that focus groups typically include at least six participants and aimed for at least 24 participants in each province and/or hiring mechanism. The focus groups were led by the first author (C. Kelly) or the second author (L. Dansereau) with two student research assistants taking notes. All participants were offered an honorarium or gift card ($25 CAD) in line with established research practices [31].
All groups had rich responses, even those with few participants. Participants were asked about their home care experiences and decisions, individual situations, with questions designed to facilitate intersectional analysis (see Additional file 1 Appendix 1: Focus group guide). Client demographics are summarized in Table 1. At the time of the focus group, 21 participants were hiring agencies, 33 were acting as individual employers, and 2 participants were doing both. Notably, 14 participants (25%) had experiences with both approaches and their participation greatly strengthened and confirmed thematic findings. Most of the participants were born in Canada (68%), were financially comfortable (75%), were white (71%), women (61%), and between the ages of 45 and 80.
All focus groups were professionally transcribed and underwent qualitative thematic analysis using open and axial coding techniques and Dedoose qualitative analysis software [32][33][34]. To account for the variation in focus group size, the coding focused on individual responses rather than group discussion. Each transcript was analyzed by two of three possible independent coders [Christine Kelly, Lisette Dansereau, and a student research assistant]. The coding structure was determined through regular discussion [24,[33][34][35][36]. In order to apply the theoretical framework, participant details such as gender and individual circumstance are included in all quotations and we report on a non-dominant theme shared by participants from ethnic and cultural minority groups. Intersectionality posits that privilege can shift depending on the circumstance-as such, some themes emerge as commonly shared and others differing when considering social location. See Table 2 for information on the codes used for this article. Participants are given pseudonyms in all publications.

Results
There are five key themes that emerged from the focus groups related to agency use and DF home care: (1) high satisfaction, regardless of arrangement; (2) agencies mediate administrative burden; (3) out-of-pocket expenses; (4) linguistic and/or cultural matching; (5) informal support networks. There were very limited differences in findings across the two study sites.

Theme 1: High satisfaction, regardless of arrangement
Our focus group discussions found that in most cases, accessing DF home care is an intentional shift away from other government-managed services. That is, moving to DF home care is often a result of dissatisfaction with other public services. Lydia, an individual employer for her 91-year-old mother, shares a typical trajectory:  Other reasons cited for regular home care "not working" include inflexibility in tasks the workers can do, rigid scheduling, rushing, and a high absentee rate. For example, in focus group discussions from Manitoba, Drew, an individual employer arranging services for his mother with mild dementia, and Giuseppe, hiring an agency to support his wife with Lewy body dementia, describe similar situations to Lydia when asked why they enrolled in DF: Consistently among the participants in this study, families and clients are more satisfied with DF home care especially as compared to government home care services due to the improved consistency and increased flexibility in the timing and types of the workers can do; this satisfaction was not related to whether or not the client and family were using an agency or acting as an individual employer. The thematic analysis did not reveal notable differences in satisfaction linked to intersectional social locations.

Theme 2: Agencies mediate administrative burden
Among those using an agency, families and clients talked about the ways agencies mediated the administrative burden of using DF home care. Lily, an older spousal manager, described arranging care after her husband had a stroke; unusually among the participants in this study, Lily and her husband went directly on to the DF home care option instead of accessing other services first: Families and clients reported using an agency to help with paperwork, hiring, and back up care. Gina, also an older spousal manager described "I just went for the [agency] option because I have enough on my head without having to worry about finding somebody. I'm new to the area; I don't know a lot of people and I just wanted someone that was reliable and good" (Alberta, group 12). Lynne, supporting both parents and organizing DF services for her father, said "I don't have the time at all to deal with hiring -and I don't have the expertise and that's why I relied on the agency" (Manitoba, group 6).
One participant, Leah, an older woman with disabilities who was arranging care for herself for a number of years, summed up the first two themes -enrolling in DF home care because of dissatisfaction with other public services and hiring an agency to reduce her administrative burden: Lily, an older spousal manager quoted previously in this theme, explicitly mentioned that using an agency "alleviates some of the stress. I don't need more stress in my life" (Alberta, group 14).
When focusing on the reasons for using DF home care and satisfaction, a relatively positive picture begins to emerge; however, the narratives reveal diverse and sometimes divergent experiences related to ability to pay out-of-pocket expenses, importance of linguistic and/or cultural matching, and the availability of informal supports. These three factors shaped whether or not using an agency was experienced as advantageous or not.

Theme three: Out-of-pocket expenses
It was common for families and clients to "top up, " "pay the difference, " or "add hours" when using DF home care -whether through an agency or acting as an individual employer. There were many comments across the focus groups about the additional financial requirements associated with DF home care. Participants expressed being in a financial situation that enabled them to use DF home care with the addition of their own monies. For example, Viola who was herself over the age of 65 and organizing care for her mother-in-law, explains: Viola: "We're very lucky, my father-in-law was careful and he left enough so that we were able to hire a lawn service to look after the yard, and we have a cleaning service to come and clean the house for her. So, because they don't do heavy cleaning. And, I mean, we are in a very lucky situation financially for her. " (Manitoba, group 1) In the same focus group, Elisha, an older man organizing support for his wife, adds "you do need some more of your own financial resources [to use this program]. " The participants who indicated they did not contribute additional funds often identified a specific reason why, for example having a spouse as "free labor" (Alberta, group 10) or because they were eligible for additional funding through other specialized programs or insurance settlements.
There were shared reasons for the out-of-pocket expenses across both groups as participants discussed needing "more care" or additional hours. For example, as Marg said, "Most of the time, well all the time, you don't get enough hours and so you would have to pull either your own resources or your own funds, your own money" (Alberta, group 9). Yet, there was a clear difference in the reasons provided between the two categories of participants. For those using agencies, participants commonly spoke about the gap between funded hourly rates and the rates charged by agency providers. Travis, an older person living with a progressive neurological condition and arranged care for himself, explains "My [agency's] rate is 25 bucks [an hour] … And that means that the difference between what the province contributes and what I contribute is a tax-deductible amount of anywhere from $6,000 to $10,000 [per year]" (Manitoba, group 2). Jaime, from the same focus group, also commented on the gap between DF funding and agency rates: "It's a rate issue. They charge 30 bucks an hour. The system pays $21.40. We make up the difference. We recognize we have the luxury of being able to afford that. " In Alberta the funding rates were higher but nevertheless may not cover agency charges, as reported by Gina, arranging care for her husband with dementia:

Gina: [DF home care] is giving me $31.49 per hour and I am paying $35 per hour … my fear is there's going to come a time that I am going to need more hours and I don't know how I'm going to afford it, because it's still about -the difference is still about 100-something dollars a month and that's a lot of money. (Alberta, group 12)
Drew described subsidizing care "by about 40%" while in another discussion, Jack commented "reliability, consistency and dedication are priority items for me, and so, you know, we get a little bit from home care, so many hours, but we cover approximately $40,000 a year over and above that for our staff. " Marjorie explained that DF funds were not covering the cost of agency services for her mother due to a two-hour minimum booking: For those acting as individual employers, a reason cited for contributing additional funds was to improve working conditions. It is beyond the scope of the article to fully report on themes related to working conditions, yet there was consensus among participants that workers "take home" less pay when hired through an agency as opposed to being employed directly. Many of the participants were concerned about the welfare and working conditions for the workers -and participants were not necessarily aware which agencies were for-profit or nonprofit. For some participants, this awareness factored into their decision to act as an individual employer. For example, Julia, arranging services for her in-laws and previously for her recently deceased mother, described "With going through an agency unfortunately the agency takes a large chunk of what the worker would make. And that fee is really why I wanted to be able to pay the person directly so that $10 an hour of their money really wasn't going to the agency" (Manitoba, group 3). Hao explained switching from an agency to an individual employer "I found that in hiring yourself and also setting the wage yourself, you could enhance the motivation and also you could give them decent pay" (Alberta, group 9).
The costs associated with using an agency contributed to why some of the participants ended up using the individual employer model. Crystal, a spousal care manager working full time, described having to switch agencies due to increases in fees and eventually being forced into the individual employer approach: "Then we switched to another company and then we just kept going. It was the same story over and over. So finally we hire our own people now, we don't go through the agencies anymore" (Manitoba group 5). Robyn, hiring workers to care for her mother, commented "[agencies] are OK for interim plus the cost is, you know, about a third higher than what I would be able to manage; so they're kind of cost prohibitive" (Alberta, group 11).
Not all of the participants in our study were accessing DF to support them to stay in their own houses, condominiums, or apartments; some of the participants were living in private retirement communities or settings that provided some level of assistance and were using DF to "top up" or supplement this care. These were among the only exceptions of those not paying to top up their DF home care. Indeed, they were already paying extensively for other care arrangements. Rachelle, who moved her husband into a private supportive living environment to avoid him being transferred into residential long-term care home, describes: In a particularly compelling story, Neve who self-identified as Black African and describes her and her mother as low-income, explained their inability to use the agency option due to the financial barriers related to having to pay for services first and then apply to the local DF program for reimbursement: In summary, it was common for participants to contribute personal expenses in order to use DF home care, with differing reasons based on hiring mechanism.

Theme four: Linguistic and/or cultural matching
In light of our intersectional approach, we share a nondominant theme from the focus groups that represents the experiences of specific participants from diverse ethnic backgrounds. If a family member had limited fluency in English it was important to find workers with a shared linguistic ability and sometimes shared cultural backgrounds. Agencies were not effective at meeting this need, and participants described choosing the individual employer model to address this. Alexis and her family immigrated from the Ukraine, and she described her reason for being an individual employer: "we need to hire someone who can speak a language that our parents are speaking" (Manitoba, group 1). In another focus group, Lydia, caring for her 91-year-old mother who did not speak English, described a similar reason for choosing the individual employer path: "we needed specifically somebody that could speak Chinese, our dialect of Chinese. So it was really hard that way. But eventually we found someone" (Alberta, group 8). Neve, whose family originated in Eritrea, and Marcia, whose family originated in the Ukraine, both concurred: There was only one example in the focus groups of linguistic and cultural matching through an agency; notably, the person was seeking a Filipino caregiver who spoke Tagalog, which is a relatively common immigration group in the two provinces in this study (Manitoba, group 6). In each case described in this theme, the care manager spoke English and was able to arrange DF home care on the care recipient's behalf; this suggests that those families who do not have an English-speaking member to arrange linguistic matching are less likely to be successful in doing so.
The desire for worker matching was not limited to language, but also involved culture and shared values. Andrzej, who was arranging care for themselves while also holding a professional career, described choosing to become an individual employer: The participants in the focus groups who were supporting clients with limited English ability chose the individual employer pathway as an opportunity to recruit and hire workers with shared linguistic and sometimes cultural backgrounds. The agency pathway was not seen as an option for meeting this goal.

Theme five: Informal support networks
Finally, it emerged that DF home care, whether through an agency or the individual employer model, is predominantly possible only for those who have additional help from a co-residing spouse or family member, or extensive involvement from unpaid family and friends. Julia, who moved her mother into her home, described the network available to her mother: "There's four of us in the household so there's always someone that can be with grandma. But if we had to pay for those hours we'd never, ever have enough" (Manitoba, group 3) The importance of a robust informal support network was especially acute for those needing supervision and overnight care. Julia, who brought her mother to live with her, described her situation and the extent to which her family network pitched in to help: While perhaps not unique to DF home care, a solid, and perhaps extensive, informal support network is required to provide enough support for most people.

Discussion
While acknowledging that DF home care is a niche option in Canada this study set out to shed light on the role of agency providers in DF home care in two Canadian provinces. There are advantages and disadvantages to including agencies in the DF home care landscape. Our findings add to existing and growing research that demonstrates clients and families are more satisfied with DF home care options [2,4,6]. The findings add that in the two differing provincial contexts in this study, satisfaction with home care services were improved through DF home care regardless of whether services were delivered through an agency or through individual employment. For many of the participants, experiences of DF were informed by experiences of other public services that the participants overwhelmingly found inadequate and inconsistent. This is an important finding, as it supports person-centred models of home care delivery that include high degrees of choice, consistency, and flexibility in contrast to regimented time-and-task based care. DF home care can demonstrate practices that may improve other public home care services in Canada. For example, "social task shifting, " where workers are allowed to take a more flexible and broader array of duties (e.g., help to attend social activities, a care plan that varies day to day) is a benefit of DF home care regardless of whether a person is using an agency or acting as an individual employer [37]. Experiences of people using DF home care programs provide a lens to critically reflect on what is working and what is not working within other home care delivery models in Canada.
Secondly, participants indicated that they purchased services from agencies primarily to reduce the administrative burden and stress of arranging DF home care as an individual employer. Administrative burden and paperwork are well documented as barriers to accessing DF home care in many countries [10]. There are serious health and social impacts of caregiver burden and burnout [38,39], and any effort to reduce the work of system navigation and care coordination is important from a population health perspective [40]. While agencies might seem like an obvious solution to reducing the administrative burden of DF home care, participants in our study revealed economic barriers to accessing the support provided through agency care. Funding and finances are front and centre in the DF home care model, studies on DF home care can perhaps more easily reveal the extent to which people are adding their own money or topping up public services. As will be taken up by our team in a future publication, the study also found agencies are associated with lower rates of pay for workers.
The study adds to the limited literature that speculates on DF home care as an avenue to encourage linguistic and/or cultural matching between workers and those who need care. Like existing literature [13], we found that this can be a priority for some families. Our examples demonstrate that linguistic and cultural matching predominately takes place through the individual employer model, and further, all such cases among our participants had an English-speaking family member to organize the care. This suggests that, as in the UK-based study, there may be linguistic barriers for people with limited English language ability to accessing DF home care [12,28]. Finally, as with regular home care options, clients with limited or inadequate informal support networks will struggle with the care available through this model. The vast majority of care at home is provided by unpaid caregivers [41], and this study confirms that families and clients using DF home care also rely on extensive additional support.